By Carol Sieverling
Editor’s Note: This information is based on tapes of Carol Sieverling’s October 2000 patient visit with Dr. Cheney. He gave permission to share this information, but has not reviewed or edited it.

Dr. Cheney recently came across some information regarding the dangers of Selective Serotonin Reuptake Inhibitors (SSRIs), such as Prozac, Zoloft and Paxil, and stimulants like Ritalin and Provigil. During office visits, Dr. Cheney shows patients the book Prozac Backlash: Overcoming the Dangers of Prozac, Zoloft, Paxil and Other Antidepressants by Joseph Glenmullen, M.D., a psychiatrist at Harvard Medical School. It includes endorsements from other Ivy League psychiatrists. Cheney calls the implications of this book "staggering."

When talking with patients, Cheney usually opens the book to a picture of a monkey's brain before and after it received a very potent SSRI. The "before" photo shows a dark background filled with fine white lines and white blobs, healthy neurons. The "after" photo is very dark, only a few white lines and blobs remain. Most of the brain cells had been "fried."

SSRIs and stimulants work by increasing the firing of neurons. While this often has great benefits in the short term, doctors are now realizing that long term use "fries" brain cells. The body views any neuron that fires excessively over time as damaged, and destroys it.

SSRIs and stimulants, taken over a period of 10 years or so, can lead to a loss of brain cells, causing neurodegenerative disorders. Many doctors have recently seen a sudden increase in patients with neurological symptoms, and most have been on Prozac, or a similar drug, for about 10 years. Cheney is seeing this in his own practice.

During office visits, Cheney also shows patients a copy of the May 22, 2000 issue of Newsweek with Michael J. Fox on the cover. It has an excellent article on Parkinson's Disease, a condition that involves a loss of neurons in the area associated with motor control. Parkinson's drugs stimulate the remaining neurons to "perform heroically," firing excessively. However, the article notes that while benefits are seen initially, neurological symptoms get much worse at the three to five-year point. Patients experience wild involuntary movements, etc. These drugs, though helpful in the short term, actually speed up the degenerative process.

What mechanisms are at work causing neurons to be "fried?" SSRIs are often prescribed for depression, which involves a lack of serotonin. Serotonin is a neurotransmitter, a chemical messenger. One neuron releases a burst of it into the intersynaptic cleft, (the gap between neurons). The serotonin is then taken up by special receptors in the adjacent neuron. Thus a message is sent from one neuron to another, with serotonin carrying the message across the gap. Excess serotonin is cleared away before a new message is sent. A "reuptake channel" in one neuron vacuums up the left over serotonin.

SSRIs are designed to address a lack of serotonin by blocking the reuptake channel from vacuuming up excess serotonin. While this allows more serotonin to connect with the receptors, often too much is left floating in the intersynaptic cleft. The only way the body can get rid of this excess serotonin is to oxidize it. Unfortunately, this turns it into a toxic compound that, over time, kills both the sending and receiving neurons.

Cheney stated, "What starts out as an attempt to increase serotonin and reduce symptoms ends up with the destruction of the serotonergic system itself. It takes about a decade, more in some, less in others.

Now when the serotonergic nerves are dead, you start getting these motor neuron problems, which is what we're seeing." Cheney commented, "You know what a lot of doctors (who do not understand CFIDS) are doing? They're saying 'Well, let's just give them an antidepressant'. And they are frying their (patients') brains and they don't even know it. In fact, a CFIDS patient on one of these drugs fries their brain even faster than a non-CFIDS person." (See the article on Klonopin for an explanation.)

Cheney went on to say, "The other way some people with CFIDS are going is stimulating the brain, using drugs like Ritalin or Provigil. They do the same thing - they fry the brain. They cause neurons to fire at lower stimulus by lowering the firing threshold. All stimulants are dangerous, especially over the long haul. I'm not saying that you might not find them useful in the short-term. But over the long term, the physiology demands that neurons that fire excessively be killed."

Serzone, recently pulled off the market in Europe, should be banned here, a consumer advocacy group told the government Thursday -- citing 11 deaths from drug-caused liver failure.

Serzone "appears to be one of the most dangerous antidepressants marketed," Dr. Sidney Wolfe of Public Citizen wrote in a petition filed with the Food and Drug Administration.

It's impossible to predict which patient will get Serzone-caused liver failure, "nor is there any way to guarantee that once diagnosed, patients' lives can be saved," he said.

Public Citizen counted 53 cases of liver injury, including the 11 deaths, among Serzone users reported to an FDA monitoring system since the drug began selling in 1994. The FDA estimates its monitoring system counts fewer than 10 percent of the side effects caused by medications.
Antidepressants cause a variety of side effects, but Wolfe contends there are numerous equally effective but safer alternatives to Serzone.

The FDA will seriously consider the petition, said spokeswoman Susan Cruzan.

Cases of liver failure among Serzone users are very rare and "we don't know why they're happening," said Rob Hutchinson, a spokesman for manufacturer Bristol-Myers Squibb Co. But he said rates of liver problems have not changed over the years, suggesting no need for renewed concern.

Bristol-Myers quit selling Serzone in Europe in January, saying it made the decision because of low European sales, not safety questions. But some foreign regulators cited concern about fatal liver failure at the time, and Wolfe told the FDA that several had been pursuing stronger safety measures.

Wolfe said Serzone inhibits an enzyme key to drug metabolism, allowing the anti-depressant to build to toxic levels in the liver. That enzyme also metabolizes numerous other drugs, meaning patients taking multiple medications could be at higher risk, he said.

In 2001, the FDA added its strongest warning possible to Serzone's label, bold print inside a black box stating that one side effect is potentially fatal liver failure. FDA's Cruzan would not say if reports of liver damage have dropped since the stricter warning appeared.

That a lot of the prescriptions for heavy-duty antidepressants are written by docs totally unqualified to be writing prescriptions for these types of drugs. They lack a basic understanding of the dangers involved, mainly because all their info on the drugs comes from the pharaceutical reps. Most docs consider the published potential side effects a rarity. This is why it is so critical for us to do our own research and decide what goes into our bodies.

My daughter has been on Prozac for so long that it is now almost impossible for her to get off it. She does suffer from depression, so it was not just prescribed for her FMS, but I worry that she will suffer permanent brain damage from it. She says it does help her with the pain. It allows her to continue working. I suspect at some point, though, that will become too great for her with or without the Prozac. The doc got her hooked on it at a time when Prozac was handed out like candy.

Hello,
I was just wondering if Wellbutrin is just as bad as the other SSRI's? I know it is a different formula, but does it cause the same bad, long term side-effects. And, is Enada a better choice? So hard to know what to do!

during use or withdrawl of these stupid things (SSRI's and Tricyclics). Paxil (just 20mg) sent me to the ER on the third day of withdrawl, due to vomiting, palpitations, adrenalin shocks (aka startle relfex)every 2-7 seconds!!! and a blinding headache, affecting my gait. It did pass though, after a few more days.
However, I developed the palps, and tachycardia, again after properly tapering off of 150mg of effexorXR. I just returned my holter monitor to the hospital today after wearing it for 24 hours. I have already been on Inderal 10mg 3x's a day for over a month, and the symptoms have not gone away, as my doctor had said they should in two weeks after withdrawl. It's been almost seven weeks. Now, she says I may have to see a cardiologist (just what I need, another specialist) and/or stay on the Inderal. I am sooo mad still. As I said before, the rheumatologist insisted that I try effexor, or, he didn't know how else to help me. I got on the effexor, and everytime I complained of the muscle twitching and jerking, somnolence, anorexia, he DOUBLED THE DOSE, (two times) and would give me Ativan, or Klonopin for panic attacks---which I have NEVER had, and finally gave me Zanaflex for the muscle twitches, after I told his nurse I had just tried zanaflex four months earlier for the neurologist, and didn't tolerate it well, (I kept falling, and it made my nystagmus worse). The klonopin caused me to run off the road three times in one trip---which was my ONLY time driving while on the effexor. From then on, I relied on my husband or mother, cause I WAS NOT gonna drive. Also, my gastroenterologist had to prescribe a laxative, as over-the-counter ones would not work at all for the constipation. I still have to use it, though not as much. I had to double or even triple the dose to have any results while I was on the effexor. When I had called the rheumy, about the constipation, his nurse replied, that, yeah, alot of people say they get that. Uhh HELLO, thanks for caring lady!!!

Grrr. The whole anti-depressant thing angers me to NO END. They have got to stop shoving these down peoples throat. They are NOT harmless little sugar pills, and for some people, they can realllly do way more harm than good.

As I read Mikie's, I now know why I have specific physical problems with taking SSRI's for years. Then, to mention Michael J. Fox in the same artlicle, I'm really afraid because I can understand the problems he's having ~ as if I'm on the verge of having them myself.

In a search, I just found this thread. i posted today that I am quitting Lexapro cold turkey, after having been on that and before that, serzone for years.
Now I am wondering, is there hope for the brain cells to repair or regrow after years of damage from the ssri's??
I hope so. I am more convinced than ever now to go off of all of them.
What is the name of the book that is recommended here by Glenmullen to find alternatives to ssri's??
Thanks to all of you,
Solstice

so I could get some sleep tonight (my muscle spasms are keeping me awake). I was not too keen on it, but he assured me it's very safe and non-addicting. Has anyone tried melatonin? I just want something to help me sleep.

the SSRI category..and muscle relaxants are really effective for insomnia..but I would educate, myself, on any drug which
is prescribed for you, as some medications are contraindicated, for certain individuals, and docs don't seem to closely watch that when prescribing..

I do not think that Wellbutrin is, as a whole, contraindicated for us,
as the SSRIs are, given our slight seizure state, but I take the smallest dose, on higher doses, it might be a problem and people should educate themselves on any drug.. It is very effective for higher energy levels and more of a antidepressant effect...But, in long term, I don't think they have the statistics on that, and it is probably not good to be on for the long term..

I would never take a medication, just because it was prescribed..It is our bodies, and we have a right not to take something that we learn is harmful to our DDs. If my doc insisted, after knowing the harm, I would fire that doc and find another one.

All that being said, I am exploring the world of herbs.. I am beginning to think that Olive Leaf Extract is increasing my energy levels and providing the benefits, without the risks of Wellbutrin, plus much more, and can probably take it, long term or as needed..but you have to explore every chemical (whether synthetic or natural) put in your body...
[This Message was Edited on 04/12/2003]

TO GREATER KNOWLEDGE AND HEALTH,
AMELIA[This Message was Edited on 04/12/2003]

on the subject of SSRI's and stimulants - and no doctor if he is familiar with CFS or FMS will shove a pill at me, which I do not want or agree with. To begin with, I am selecting a doctor (which is not easy for some) who is pretty familiar with CFS/FMS to eliminate the overprescription of any of drugs. These drugs have to be balanced and monitored at all times.
I do not suffer from depression with CFS/FMS, but get more quality of life because the brain chemicals are out of balance with these dd's and because of that, gives all of us a lot of the symptoms many of us share. Therefore, I am probably one of the only ones who believes in more quality of life/vs looking into the future and having a fried brain which I am sure, is the opinion of may be a few doctors.
Like everything else in life, if one is knowledgeable about meds and has a doctor who most of all understands what is involved with CFS/FMS and does not overprescribe, some of the mentioned meds are a less harmful in moderation than many other drugs people are taking.
This is my own opinion and I have been on SSRI's for years and lately Ritalin as well, and am very happy that it gives me a little bit more of a life. I do not experience the brain fog nor other cognitive symptoms since I am on Ritalin, but above all, no matter what we take or do, it is a personal decisions which we must be happy with.
Kind regards, Lucky

so many general practitioners are prescribing them these days that it is scary! A friend's son recently went to the doctor for a check-up and came back with a prescription for Effexor! He is 20 years old . . . I couldn't believe it. He doesn't have CFS, FM, and isn't depressed! Since then he has had another 20 years old friend who tried to overdose on Paxil & Neurontin . . . good grief! Luckily the Paxil was extended release and he was taken to the hospital and is fine now. All of the t.v. commercials make everyone want to try these drugs for every little problem. One thing I have learned since becoming sick with CFS is that there isn't a miracle pill who is going to make us well immediately. I think that is what the general public is looking for. I have a friend with FM who is on Prozac and she doesn't take it everyday, just when she "needs" it . . . that isn't how it is supposed to be taken. I read an article that talked about people on Prozac suddently commiting suicide for no reason when they aren't consistent with it . . . really scary!

I do want to say that quite a few articles I've read and in speaking with a psychologist that the tricyclics are supposed to be somewhat safer. The SSRI's are "newer" so they don't know long term what they will do to us, but the tricyclics have been around since I believe the 50's. Also, my only experience with any antidepressants was with Amitryptilene 5 mg. for sleep for a short time . . . I just want to say that (although some people have said that this is mood altering) I can assure you that there is no antidepressant reaction to such a small dose . . . it basically acts as a sleep aid. In large doses the tricyclics are for sleep/pain and in large doses they have the opposite effect which is as an antidepressant. They also have the side benefit of being an antihistamine & modulating the immune system. These days I'm not thrilled about taking any drug . . . I seem to have a hypersensitivity reaction to every one of them, esp. ABX.

First of all, we have new members all the time who have not read Dr. Cheney's articles. His article on Klonopin does such a good job of explaining the slight seizure state which he believes causes so many of the symptoms of CFIDS. Now, Klonopin itself is not without its risks, just like any drug. I do suggest people read these articles but I do not consider it "beating a dead horse."

I have stated here often than Cheney is expensive and I have asked for people who have been helped by him to please post here. Like all these expensive experts and clinics, there do not seem to be many who have greatly helped anyone here that I can find. There have been a few.

I am not saying that SSRI's and stimulants do not have their place in treatment. What does bother me is the number of docs who hand these drugs out as though they were completely benign. Many of these docs are not qualified to prescribe these medications and many do not tell their patients of the potential risks. I do think that if anyone wants to quit these, or any, medications that it be done under a doc's supervision and not cold turkey on one's own.

I welcome your medical opinions as I do all our medical professionals' opinions. It takes a little bit of time for people to know who you are and respond. I know you have told us you are a doc, but many of us have terrible memory problems. I hope you decide to stay with us, but the choice is yours.

For once, I get my thoughts on SSRI's and our treatment choices for CFS/FMS reconfirmed and also your opinion about Dr. Cheeney. He has not helped a lot of people with all his treatments, but charged high fees for his expertise which has brought little success for his patients. I myself, having CFS for 15 yrs., have learned who I want to believe and who I do not of the many opinions and treatment options some CFS specialists advertise - and above all, that each one of us is responsible for their treatment options and have a choice in their selection of meds. Those, who believe that their brains are fried (my doctor was laughing when I told him!), and are afraid of it, will have to pay with less quality of life, the little we have.
Well, I was happy to read your input which in my case reconfirms that yes, I am on the right 'track' with how I am choosing the direction I think I am to cope with the many symptoms we experience every day. At least, I am able to do some things, I enjoy doing because I am taking 30mg of Celexa and 30mg Ritalin vs. of not been able to get out of bed - which happened before my doctor suggested these types of treatments. I am thankful ever after.
Take care and good luck, Lucky

I am very happy for you that these medications are helping you. We are all different and what works for one will not work for another. You are correct in that we do need to make our own decisions, including our choice of docs. There are a lot of "experts" out there who have conflicting opinions for our treatment. The best we can do is to read and decide for ourselves.

It is not necessary for us to polarize and line up in camps for or against any treatment. People often get very defensive of treatments which work for them and take it personally when someone has a differing opinion. Dr. Cheney's opinion is just one opinion. I do respect him and his opinion and the Klonopin treatment he suggests has greatly helped many of us. Many here also swear by their antidepressants, but we have also had some real horror stories about them, especially the SSRI's.

I have stated many times that while I respect Dr. Cheney and his opinions, I have not heard from more than a couple of people here who feel he has significantly helped them. I would like to hear from anyone who has been significantly help by one of these "experts" who charge a lot. I would also like to hear from people whose local docs have really helped them too.

What I really want is a place where people can state their opinions or experiences without needing validation or feeling defensive of their positions. The more info we have here, the better. That way, at least people can make informed decisions. Thank you for sharing you opinion with us.

I am sorry if I gave the wrong impression that I take sides who should or should not take antipressants or other meds, but I wanted to also point out, that I read a lot of posts where I see how gullable many people are with these dd's and misinformed, and they are the ones who I referred to. I have not seen any researcher or CFS/FMS doctor yet who has the answer to many of the problems we are having, the opposite, as mentioned, they are so expensive that they are trying to exploit sick people - and in their desperation people will pay and believe what these 'doctors' tell them and prescribe them. As you know, there are many different views etc. out there, and some of these inaccurate informations are passed on.
This can be very confusing for some people, and the messages I am reading at times talk for themselves. We are all looking for answers, but the right ones....
Therefore, I made it clear, that each one of us is responsible how to handle our illnesses, there is enough information out there to educate newly diagnosed people, and abvoe all have control over the treatments they are getting. This is, if you asked me, the most fundamental tool in managing the many symptoms we are experiencing. What works for one might not work for another. Klonopin might work for you, and antidepressants work for others to manage their illnesses. But we know about that.
The problems with any of these meds, they can be overprescribed easily or the doses are too high and can have the opposite effects, and one of the reasons is that we are high maintenance patience and it is easy to write another prescription fast to get rid of us and no questions are often asked if we want/need/or can handle these meds chemically. And I believe that this was your concern as well when you posted your message. Seretonin/dopamine and other neurochemicals need very fine tuning especially in most CFS/FMS patients and the more is not the better and can cause the opposite, depression. But, again, I am not sharing nor believing Dr. Cheney's statement, which is my choice. For me it has worked over the many years of being ill, to have control - and not the doctors, unless they can prove to me and earn their merits and trust that they have the answers to many of our problems and not just guessing.
Take care, and nice hearing from you. Lucky

[This Message was Edited on 04/13/2003]
[This Message was Edited on 04/13/2003]

Thanks for posting. I think we both agree on many things, especially for the patient to be responsible for whatever he or she takes. This takes a lot of research, reading, and making sure our docs are knowledgable, or at least, willing to learn.

You are right about dosing and when it comes to these kinds of meds, it can be very tricky getting just the right dose and sometimes the right combo of drugs.

I think the biggest problem we all face, including docs, is that there are no "rules of thumb" for helping us. We all react so differently to medications. I've been exhausted for months and decided to try the stimulant, Provigil, despite the fact that I generally believe they can work against the slight seizure state and make it worse. I am very disappointed that the Provigil had an opposite effect on me and made my brain more fogged and made me more fatigued. I had hoped that since the Provigil works on a much smaller region of the brain than other stimulants, it might be safer. Caffeine works better, but it interferes with sleep. Again, no easy answers.

I am always happy when someone finds a drug or a combo of drugs which help.

Nice to hear from you again and exchanging some of our mutual thoughts.
I am sorry that the Provigil is not working for you. I asked my doctor last week to switch me from Ritalin to Provigil, but he did not want to prescribe it. But I believe that he probably was scared how I would react to it, knowing that I am doing relatively well on the Ritalin. As I mentioned at one point, the Ritalin has been the biggest relief from all other meds for me, and I tolerate it well, but also try to keep the dose to a minimum.
As you, I have been very fatigued lately, but it is probably more caused by the diverticulitis. But also, with all my precautions and fungal meds, I also have bronchitis again as well. Meanwhile, as you do, I try my best to cope with all these challenges and new symptoms.
Take care and hopefully you get the fatigue under control - which would be great. Lucky

I am so sorry about the bronchitis. Geez, this is the last thing you need. I always suffered from respiratory and sinus problems this time of year in Colorado. Usually, I'm not bothered down here, but I think the Red Tide episode set off a whole bunch of sensitivites for me.

Yesterday, I took an Allegra and it was amazing how much better I felt. Think I'll try it again today. Tree pollen is high and all my neighbors are sneezing too. I think these damned allergies are getting me down.

I have a ton of stuff to do before my little nip 'n tuck next week and my daughter's visit to help me through the first few days.